GloBE-Reg: A Global Registry for Evaluating the Safety and Effectiveness of Growth Hormone Therapy Across The Age Span

Joseph McElvaney; Malika Alimussina; Jillian Bryce; Minglu Chen; Sanhita Koley; Jessica Anderson; Chen Suet Ching; Ahmed Syed Faisal; Consortium GloBE-Reg GH

doi:10.1530/endoabs.117.OP4.4

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Endocrine Abstracts (2026) 117 OP4.4 | DOI: 10.1530/endoabs.117.OP4.4

SFEBES2026 Oral Poster Presentations Endocrine Cancer and Late Effects (4 abstracts)

GloBE-Reg: A Global Registry for Evaluating the Safety and Effectiveness of Growth Hormone Therapy Across The Age Span

Joseph McElvaney ^1,2 , Malika Alimussina ¹ , Jillian Bryce ¹ , Minglu Chen ¹ , Sanhita Koley ¹ , Jessica Anderson ¹ , Suet Ching Chen ^1,2 , Syed Faisal Ahmed ^1,2 & GloBE-Reg GH Consortium ³

Author affiliations

¹Office for Rare Conditions Registries, University of Glasgow, Glasgow, United Kingdom; ²Developmental Endocrinology Research Group, Royal Hospital for Children, Glasgow, United Kingdom; ³https://globe-reg.net/globe-reg-gh-consortium, Glasgow, United Kingdom

Introduction: The Global Registry For Novel Therapies In Rare Bone & Endocrine Conditions (GloBE-Reg, https://globe-reg.net/) project was launched in 2022 with the aim of supporting studies that focus on effectiveness and long-term safety of specific therapies in adults and children. The project's initial focus has been on recombinant human growth hormone therapy (rhGH).

Methods: GloBE-Reg consists of three dataset layers: (1) core data elements applicable to any rare condition; (2) the selection of a specific therapy and diagnosis; (3) a therapy- and diagnosis-specific minimum dataset, which collects longitudinal data including clinician-reported outcomes and adverse events. The fields within GloBE-Reg are developed following guidance from short-life expert working groups.

Results: Since its launch, 40 centres from 23 countries in 5 continents had enrolled 4,944 cases with a median current age of 12.5 (6.1, 18.0; 10^th, 90^th centile). Of these, 513 (10%) were above the age of 18 yrs and of these adults, 323 (63%) were on daily rhGH, 163 (32%) on long-acting rhGH, and 23 (4%) had stopped rhGH. In these cases, 12 different brands of rhGH were in use and the most common indications included GH deficiency in 378 (74%) and Turner syndrome in 61 (12%) with the remaining 14% including idiopathic short stature, small for gestational age and Prader-Willi syndrome. The first GloBE-Reg study that is currently open for recruitment in adults is focussing on safety and effectiveness of rhGH (daily or long-acting) in cancer survivors. Further information is available at https://globe-reg.net/studies/.

Conclusion: GloBE-Reg has demonstrated its versatility for collecting data to support long-term safety and effectiveness studies for multiple drugs and conditions. The preliminary data collected on rhGH underscore the platform's long-term utility in evaluating the safety and effectiveness of a wide range of drugs.